The challenge of change: A young man’s unexpected journey with kidney disease

(BPT) - At age 20, Tommy Shafer’s kidneys failed, and he was diagnosed with end stage renal disease (ESRD). He needed dialysis immediately to sustain life. The news shook him to his core. His thoughts immediately traveled back in time to the moment when he first learned kidney disease might change his life forever.

At 14, Shafer was active and healthy, spending his time at cross country practice and at school. It was a mild afternoon in Kentucky, and Shafer was swimming in the Ohio River with friends. He had a small cut on his foot from new running shoes, which didn’t mean much to him at the time. But the open wound mixed with the river water caused a bacterial infection. The infection landed Shafer in the hospital and caused him to develop IgA nephropathy.

“IgA is a type of antibody that helps fight infections,” said Adam Weinstein, M.D., vice president of medical affairs for DaVita Kidney Care. “When some types of antibodies are made in inappropriately high levels, they can damage the small blood vessels in the kidneys. The damage over time led to Tommy’s diagnosis of kidney failure.”

Shafer knew there was a chance he may experience kidney failure at some point in his life due to the damage his kidneys sustained. But Tommy tried to put that out of his mind at the time.

Six years later, as he was taking in his ESRD diagnosis, it was a realization he couldn’t help but face.

Dialysis replaces kidney function by filtering toxins from the blood. According to the latest U.S. Renal Data System Annual Data Report, more than 660,000 Americans are being treated for ESRD. Of these, 468,000 are dialysis patients.

The lifestyle changes for dialysis patients can be significant.

“Patients must closely manage their diet, fluid intake and medications,” said Dr. Weinstein. “Dialysis can have a big impact on the patient’s daily schedule, especially for the patients we see in-center for hemodialysis.”

There are several dialysis treatment options available to patients. In-center hemodialysis (ICHD) is the option Shafer initially chose. Most patients on ICHD visit a dialysis center three days a week for up to four hours each time.

While on ICHD Shafer found it difficult to maintain his independence and active lifestyle. After consulting with his care team, he decided to switch to a different dialysis treatment option — peritoneal dialysis (PD) — that could be administered at home. PD is a form of dialysis that uses the lining of the abdomen to filter waste from the blood.

Home dialysis treatments, such as PD or home hemodialysis (HHD), may allow patients more flexibility with their schedules. Patients dialyzing at home may experience shorter recovery times after treatments, better transplant outcomes, better blood pressure control and improved sleep.

“I wanted to feel in control of my health after experiencing such an abrupt change,” Shafer shared. “Ultimately, PD allowed me more flexibility.”

Shafer was simultaneously pursuing a kidney transplant. In 2015 at age 21, he found a living donor and received a transplant.

“I was hopeful it would allow me to close a big chapter of my life and move forward,” Shafer explained. “But this step wasn’t what I thought it would be.”

Due to complications with the transplant, Shafer was frequently hospitalized. Rather than feeling defeated during this trying time, his focus was drawn to Paige, a close friend who eventually became his wife.

“Paige spent every night by my side while I was in and out of the hospital,” Shafer said. “Though we’d just started dating, I knew she cared for me and it helped me get through.”

Shafer’s transplant ended up failing. He had to go back on dialysis. He and Paige were now engaged, so choosing the right care team and treatment option would impact them both. They decided to treat with DaVita Kidney Care, and together with Shafer’s care team, the couple chose home hemodialysis (HHD). HHD is the same dialysis therapy as ICHD, but HHD is administered at home and with different timing increments.

2018 was a big year for the couple. They got married. They traveled to Hawaii for their honeymoon. And they both decided to start new careers as patient care technicians (PCTs) with DaVita.

The Shafers were inspired by their experience with their DaVita care team and believed delivering care to dialysis patients would bring them purpose and fulfillment. They wanted to give back to fellow patients because they could truly empathize and understand the kidney disease journey.

The couple is now helping give life with DaVita while Shafer is pursuing a second kidney transplant.

“I know a transplant is my next step,” he shared. “I still want to close this chapter and move forward, always trying to be a better version of me.”

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